Daniel H Grossoehme, Sarah Friebert, Rachel Jenkins, Jonathan H Pelletier, P Cooper White, Michael L Forbes
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Abstract
Background: Stress due to a child's serious medical condition affects the entire family. The cumulative stress burden ("allostatic load") has deleterious health and economic effects.
Objective: Demonstrate adequate caregiver willingness to disclose health care utilization and work/school attendance.
Setting/subjects: We enrolled caregivers of well children (WC), children with medical complexity (CMC), and children receiving palliative care (PC) (N = 15; 5 per group) in a midwestern United States pediatric hospital.
Measurements: A novel allostatic load questionnaire and the Family Appraisal of Caregiving Questionnaire for Palliative Care were used.
Results: All caregivers (100% female) completed the study, with 9% of data missing. PC participants reported greater child health care appointments and admissions compared with WC and CMC.
Conclusions: Caregivers will disclose sensitive information for health care research, providing evidence for subsequent, adequately powered studies to inform policy-making. While underpowered for between-group analyses, results suggest pediatricians should routinely assess caregiver burden even at well-child visits.
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